Does 'Quality' of Your Life Determine the Quality of Your Care?

05/29/2015 08:44 am ET | Updated May 29, 2016

It is difficult enough for a patient to manage a chronic disease. As someone diagnosed with multiple myeloma over six years ago, I understand the potential pitfalls. But I have been fortunate in that I have not faced significant side effects from my medications, arbitrary insurance roadblocks, a lack of access and choice in care (in hospitals, doctors and medically justifiable treatments) or an inability to easily acquire information about how to best treat my condition.

Unfortunately, many other patients with chronic diseases are not that fortunate. Some insurance company place drugs - including generics - that are used by HIV/AIDS patients in higher formularies, requiring significantly higher patient cost sharing. And drugs that can cure hepatitis C are being kept from extremely ill patients.

A New England Journal of Medicine study found that insurance plans and pharmacy benefit managers are in effect working together to circumvent the Affordable Care Act and actively discriminate against sick people. Patients with chronic diseases who require lengthy treatment must "fail first" (also called step therapy) on cheaper, existing medicines before being allowed to access any novel, targeted therapies. And even when these innovative regimens are allowed, the patients must pay thousands of dollars to access them due to insurance schemes.

According to that NEJM study:

(A) formal complaint submitted to the Department of Health and Human
Services in May 2014 contended that Florida insurers offering plans through
the new federal marketplace (exchange) had structured their drug formularies
to discourage people with human immunodeficiency virus (HIV) infection
from selecting their plans.

The insurance companies did respond to the lawsuits by changing their policies, but this issue will reappear in the future. Delay, deny and defend will remain an insurance company business practice for the foreseeable future, much to the detriment of those with chronic illnesses. The insurance companies just move on to place restrictive care limits on the next patient in the next state, per this lawsuit in California.

By mandating higher copays, restrictive formularies and "fail first" procedures, insurance companies are trying to balance their books on the backs of patients at a time in which they are most vulnerable and in truly desperate need.

A reason for this adverse tiering of drug prices appears to be to deter patients from enrolling in these higher formulary health plans in the first place, allowing insurance companies to avoid paying for the long term costs of a patient's chronic care. According to an article in Bloomberg, "findings suggest that many insurers may be using benefit design to dissuade sicker people from choosing their plans".

It is very disturbing that a defined subgroup of patients with chronic diseases like HIV/AIDS, liver diseases, alcohol, IV drug users -- and even prisoners -- are experiencing significant insurance coverage issues when it comes to treating their maladies. A recent example of the modern medical "prisoner's dilemma" is a recent report that states "Illinois has been unable to meet minimal constitutional standards with regards to the adequacy of its health care program." It has resulted in a class action lawsuit being filed against the Illinois Department of Corrections and backed by the ACLU.

In looking at these cases, it appears that insurance companies are attempting openly discriminate against those patients that are most vulnerable and at the edges of modern society. Perhaps they are making an assumption that the public at large will gladly support restrictions on some moral or ethical grounds, limiting any political pushback? Is this a starting point, a slippery slope moment when care will be somehow rationed and denied for various non-medical reasons?

After all, a significant portion of those who have these diseases and would respond best to the novel and effective therapies are gay, intravenous drug users, alcoholics or incarcerated criminals. Has a religious or secular decision been made that it is somehow socially acceptable to delay and deny care to these populations? If so, allotment of medicines due to moral approbation is not a valid and ethical national health care policy (and insurance policy) that should be allowed.

Those with HIV deserve access to care. Those who are addicts deserve access to care. Those who are incarcerated deserve access to care. There should be no subtle or veiled attempt to place a social value on the lives of powerless individuals requiring chronic care. Prisoners are already serving their debt to society as determined by our legal system. Is it permissible to also deem them unworthy of life saving care and effectively impose a new sentence -- possibly a "death sentence" -- on them by making access to these life-saving drugs extremely difficult or impossible?

We have journeyed down this path before. In the 1960s and early 1970s, the Seattle "God Committee" wrestled with the issues of limited dialysis machine availabilities. In order to determine who received treatment, (as recounted in this article from Slate):

(T)he members, all unpaid, insisted on anonymity. They considered the
prospective patient's marital status, net worth, nature of occupation, extent
of education, church attendance, number of dependents (the more kids or
dependent relatives, the better the chance of being chosen), and potential to
resume work.

At that time, other hospitals replicated this program and added other non-medical reasons such as IQ, criminal records, vocational skills and employment when determining who would get care. Fortunately, thanks to medical innovation and improvements in dialysis treatment, this program was stopped in the 1970's.

But it appears to have been revived during this medical cost control craze. Who will be the next targets of blatant medical care discrimination? Will it be the old, the infirm and the disabled, people who can be denied treatments and swept away due to cost concerns? Will we openly state "well, you just don't have value in our community's concept of what a complete life entails?"

Can a civil society exist when odious, amoral plans like these that stress cost to society -- not the value of a person's life -- are used by anonymous medical administrators who don't even see the patient in question? As past history unfortunately demonstrates, this question must be answered with a resounding "no".

Health care access will truly be the civil rights issue of the 21st Century. Better access and choice in care -- and better quality results -- will result from investment in innovation and scientific advancement, not from a simplistic bureaucratic focus on cost containment. This path, which ignores that patient as person, will injure many of those in need and must be rejected.